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The journey from diagnosis to now – initial reactions


For a few months I hadn’t felt 100 percent. I had put it down to returning from a year in India. On the whole I had a very happy healthy and relaxed time there as a volunteer  for a Child and Family Development Centre, with plenty of opportunities to travel throughout the country and make lots of friends and acquaintances. However I had caught campylobacter there . The experience was what I had put down to Delhi Belly. A couple of times whilst there I had fainted then developed horrendous gastrointestinal issues. I took the usual Imodium and drank gallons of bottled water but had 24 hours where I couldn’t venture far from my room and it’s bathroom! I decided to consult the all night pharmacy which was next to the local government hospital. The chemist would not prescribe anything and told me to consult A and E next door. What an experience. Queuing for a while I was seen by a charming doctor who had actually trained in Manchester before returning to work locally in his home town. He prescribed huge amounts of antibiotics, anti emetics and rehydration sachets. I asked about his fee and was told treatment was free as I was in a government hospital. However I would need to pay for the medication. On a trolley in the corridor was an old lady awaiting treatment obviously very poorly and probably very poor too. I gave the doctor 1000 rupees and asked him to give it to her to fund her prescription when he had treated her. I told him that I was well able to pay for his consultation so suggested she would be able to use my contribution . 

Fast forward a couple of months to life in the UK. I had recently moved back home to Nottinghamshire from Oxford. I was working in the NHS and travelling back from a meeting I was passing the entrance to Clumber Park, a beautiful woodland estate now owned by the National Trust. I became very dizzy, sweaty and unwell. I could not drive any further and pulled over in a lay-by. I rested but an honestly say I was very frightened as I had not experienced these feelings before.

When I felt slightly better I drove straight to the gp surgery where unfortunately there was no doctor on duty. Apparently I looked very grey and pale and the practice nurse decided I was not fit to drive, plied me with sweet tea and told me to see the GP as soon as he came in for evening surgery. He took blood tests and eventually I managed to drive home.

 The feelings passed and I thought nothing of it until I got a call asking me to see the doctor. He had found campylobacter and also was concerned about my blood tests. He told me he suspected leukaemia but wanted me to see a colleague who was a consultant haematologist at the local hospital. Indeed the GP was right and I was given the diagnosis of CLL. It meant nothing to me . Subsequently I was told it was a form of blood cancer, a chronic form of leukaemia.I was totally shocked. My immediate thoughts were that I was going to die. Subsequently I was reassured it was the best type of blood cancer to have, I wouldn’t die of it but rather with it, by contracting pneumonia. I did not need treatment but would be monitored by the hospital. 

I had just been offered a permanent job after being in a temporary post for a few months. I panicked and thought the offer would be withdrawn when they knew about my illness.On the contrary my position was confirmed and I just got on with the work having blood tests every few months and hospital consultations. Eventually I was discharged into the care of my gp and life continued as normal for a number of years. Indeed I did live with the diagnosis.it had no significant effect on my health and gradually my fears.

To be continued…

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Maggy Jackson
  • Maggy Jackson
  • Maggie Jackson is a 72 year old woman who was diagnosed with CLL in 2005. She continued to work until 2018 in the NHS when she retired but continued working part time from home as a counsellor , integrative psychotherapist and EMDR practitioner. Maggie's professional experience has helped her to keep CLL in perspective and to live with the diagnosis and its effects on her everyday life. She doesn’t have all the answers, and freely acknowledges she is not an expert in CLL but think we can all Think Differently about it so we can live with it. Maggie's articles do not take the place of personal counselling and do not constitute medical advice or treatment. You can e-mail Maggy here.